A year ago, axolotl and awor sat together and began working on multiple projects that were designed with the purpose of getting us out of this mess in mind. One of these projects was the survey, and after months of hard work it is finally here. But the kicker is that there are a significant number of active members that are a part of this community that haven’t taken part in it. If we don’t try to help ourselves by doing something so easy, how can we expect to drive the issue forward? I don’t think most here realize how empowering this could be for us. If we had a couple hundred patients data in an organized form, describing their symptoms and stories, it would be a lot more powerful than it is in it’s current form. Also, scientists would be a lot more interested in the outcome as it would be standardized data and validated scales used in medical research.
I urge everyone reading this to both take the survey, and reach out to everyone else in the community to take part in it as well. Try to reach out to at least two of your friends that you’re in contact with here and get them to do it as well. It costs us an hour of our time and it’s one of many things we can do to be happy again. I’m turning 20 this week and I’d like to celebrate my 21st birthday feeling like we’ve advanced this issue and are making progress. It’s sad that although individually I am doing better than I was this time last year, as a group we’re still in the same place. Let’s keep things moving.
